Volume 5, Issue C ::: February 2002
A Maturing Partnership
by Rima E. Rudd
How did the literacy and health fields come to work together? Now that this partnership, tentative as it is, has begun, what direction should it take? As a public health researcher, I have worked to bring these two worlds together, believing passionately that the relationship will be beneficial for both fields, and, most importantly, for the clients of the health and literacy systems. In this article I will trace early innovations in this movement, through some current activities, and provide some suggestions for next steps.
Demographic information such as measures of age, race, income, and education are traditionally collected in all health surveys so that researchers can examine differences among various population groups. Two of these items, income and education, are considered measures of socioeconomic status. We have strong evidence that socioeconomic status and health are linked. Of course, adult educators who work with low-income learners will not be surprised to learn that those who are poor or have lower educational achievement have more health problems than do those with higher income or higher educational achievement.
The Secretary of Health and Human Services prepares an annual report to the President and Congress on national trends in health statistics, highlighting a different area each year. The 1998 report focused specifically on socioeconomic status and health (Pamuk et al., 1998). This report offered evidence from accumulated studies that health, morbidity - the rate of incidence of a disease - and mortality are related to socioeconomic factors. For example, life expectancy is related to family income. So, too, are death rates from cancer and heart disease, incidences of diabetes and hypertension, and use of health services. Furthermore, death rates for chronic disease, communicable diseases, and injuries are inversely related to education: those with lower education achievement are more likely to die of a chronic disease than are those with higher education achievement. In addition, those with less than a high school education have higher rates of suicide, homicide, cigarette smoking, and heavy alcohol use than do those with higher education. The lower your income or educational achievement, the poorer your health.
Thus, links between critical health outcomes and income/education are well established. However, until recently, health researchers had not examined any particular components of education such as literacy skills. This is because education itself was not the major consideration; education was only considered a marker of social status. Another barrier to examining any specific role that education might play was that specific skills such as literacy were not consistently defined or measured. A number of events have led some researchers to explore the possibility that limited literacy skills might influence a person's health behaviors and health outcomes.
Dozens of articles in the 1980s and scores of articles in the early 1990s offered evidence that written documents in the health field were very demanding and were often assessed at reading levels beyond high school (Rudd et al., 1999a). While this comes as no surprise to anyone who tries to read the inserts in over-the-counter medicines, what is common knowledge had never been systematically documented.
In addition, a number of health analysts writing in the 1980s had noted connections between illiteracy and health (for example, Grueninger, 1986; Kappel, 1988). A literature review published in the Annual Review of Public Health highlighted growing evidence in international studies that a mother's literacy was linked to her child's health (Grosse & Auffrey, 1989). In 1991, the US Department of Health and Human Services published Literacy and Health in the United States (Aspen Systems Corp., 1991), which highlighted the importance of paying attention to literacy issues. It offered an annotated bibliography of journal articles and books that assessed health materials as well as studies that showed a relationship between literacy skills and health-related knowledge and behaviors. For example, some differences between people with high educational achievement and those who reported that they could not read were noted (Perrin, 1989; Weiss et al., 1991). A number of studies conducted in Ontario, Canada, drew attention as well (Breen, 1993).
The main focus of most of the literacy and health inquiries, however, were studies of the reading level of written health education materials. Among those researching this subject was Terry Davis, a medical school faculty member and researcher (Davis et al., 1990). Davis and colleagues wanted an easy-to-use tool to assess and document the reading level of patients so that they could study some health-related differences between people with limited and with strong literacy skills. They developed and tested a health-related literacy assessment tool called the Rapid Estimate of Adult Literacy in Medicine, or REALM (Davis et al., 1991). This tool enabled them to examine differences between people with high and low scores for literacy and health behavior differences, such as engaging in screening tests for early disease detection. Later, for example, Davis and colleagues found that women with limited literacy skills did not understand the purpose of a mammogram and did not access screening (Davis et al., 1996). The REALM tests a person's ability to read through a list of medical words, moving from short and easy words to difficult and multisyllabic words. It correlates well with reading tests and offers a good marker of literacy level. This tool helped a small group of researchers around the country to make health-related comparisons between those with and without strong literacy skills.
Further interest in this type of research was fueled by the first national assessment of functional literacy skills. The 1993 publication of the first wave of analysis of the National Adult Literacy Survey and the findings that half of the US adult population had limited literacy skills provided critical information (Kirsch et al., 1993). The National Adult Literacy Survey (NALS) focused on functional literacy, defined in the National Literacy Act of 1991 as "an individual's ability to read, write and speak in English, and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one's goals, and develop one's knowledge and potential."
The NALS measured people's ability to use the written word for everyday tasks. Thus, people's functional literacy skills were examined in terms of their ability to find and apply information from commonly available materials such as newspapers (prose), forms (documents), and common math processes such as computation for addition or percentages (numeracy). The NALS established a uniform measure of functional literacy and offered a portrait of literacy among adults in the United States. Fully 47 to 51 percent of adults scored in the lower range: unable to use the written word to accomplish many everyday tasks such as finding a fact or two in a newspaper article, finding information on a Social Security form, or calculating the tip on a bill.
This information was a wake-up call to some researchers in the health field. We must remember that it takes a while for information to spread and, especially, to cross over disciplinary lines. Of course, the 1993 NALS findings are still Žnews' to many people in health and even in education (see the side bar on page 8 for a discussion of the diffusion process). But, as a result of these published findings, some health researchers began to think about people's ability to function in health care settings and carry through with tasks many doctors and nurses take for granted: the ability to read announcements and learn about screening, to read directions on medicine labels, to follow recommended action for self care.
Among those at the forefront were Ruth Parker and Mark Williams, medical doctors practicing in a public hospital in Atlanta. They were interested in measuring and documenting people's functional literacy skills related to medical tasks. In 1995, Parker and Williams worked with colleagues in education and measured people's ability to read appointment slips, medicine labels, and informed consent documents. They then used these tasks to develop a functional test of health literacy for adults in both English and Spanish (TOFHLA) modeled on the NALS. Studies undertaken by a team of researchers working with patients in a public hospital indicated that 41 percent of patients did not understand basic instructions, 26 percent did not understand appointment slips, and 60 percent did not understand informed consent forms (Parker et al., 1995; Williams et al., 1995). Findings from these studies are being used to convince doctors that literacy is something to which attention should be paid.
With the development of the REALM (1991) and the TOFHLA (1995), people assessing the readability of written health materials could now more precisely examine the match between the materials and the reading ability of members of the intended audience. Furthermore, researchers now had tools for a quick assessment of literacy skills so that they could include measures of literacy in health studies. As a result, we've learned that people with low literacy skills come into care with more advanced stages of prostate cancer (Bennett et al., 1998); that they have less knowledge of disease, medication, and protocols for asthma, hypertension, and diabetes (Williams et al., 1996, 1998); and that they are more likely to be hospitalized than are patients with adequate literacy (Baker et al., 1998). These studies set the foundation for rigorous research into ways that limited literacy skills may affect health.
On the Literacy Side
Health topics have long been included in curricula for students in adult basic education (ABE) classes and in English for speakers of other languages (ESOL) courses. Making appointments and identifying body parts in English were seen as necessary survival skills, particularly, for example, in refugee resettlement classes in the 1980s. Topics such as nutrition and hygiene were popular with many teachers, who reported that health issues interested their students and could be used as the subject of reading materials for developing reading and writing skills (Rudd et al., 1999a).
In the early 1990s, links were being forged between health educators and adult educators. For several years, the National Cancer Institute supported regular working group meetings of health and education researchers. Local initiatives such as those developed by Sue Stableford at a medical school in Maine, Kathy Coyne at a cancer center in Colorado, and Lauren McGrail at a nonprofit organization in Massachusetts worked across disciplinary lines and linked health researchers and practitioners with adult educators. They could now work together on developing appropriate health materials and on bringing health curricula to adult education programs. Over time, some model program funds from the National Institutes of Health, the Centers for Disease Control and Health Promotion, and, in some cases, state Departments of Public Health, supported the development of adult education curricula in specific topic areas such as breast and cervical cancer or smoking prevention. The idea of integrating health topics into adult learning centers was based on the assumption that health curricula would enhance the goals of the health field while also supporting the goals of adult education. Health practitioners working with the adult education systems gained access to and communicated with adults who are not reached through the more traditional health outreach efforts and communication channels. Thus, adult education learning centers provided the health field with an ideal site for reaching poor, minority, and medically underserved populations.
Bringing health topics to adult education programs was similarly viewed as beneficial to the adult education system. Teachers focused on health-related lessons would be building skills for full participation in society. In fact, NCSALL studies indicated that state directors and teachers considered that a health-related content would likely engage adult students and thereby increase learner interest, motivation, and persistence (Rudd et al., 1999a, b). Several curricula, such as the Health Promotion for Adult Literacy Students (1997), Rosalie's Neighborhood, What the HEALTH?, and HEAL: Breast and Cervical Cancer offered substantive full curricula for teachers who wished to offer in-depth health lessons incorporating basic skill development. However, the NCSALL survey revealed that teachers' and directors' were cautious about the appropriateness of asking adult education teachers to teach health content. This is not, after all, their area of expertise.
Literacy for Health Action
Teachers' and directors' discomfort with responsibility for certain health information led a number of us working in this area to move away from a focus on health content towards a closer examination of literacy skills needed for health-related action. After all, adult educators have the expertise to help learners build basic skills related to reading, writing, vocabulary, verbal presentation, oral comprehension, as well as math. These skills are critical for adults who need to fill out insurance and medical forms, describe or monitor symptoms, manage a chronic disease, listen to recommendations, and make health-related purchases and decisions. Furthermore, many of us were interested in expanding our work beyond the medical care setting and a focus on disease to a more public health focus with attention to maintaining health at home and in the community.
New opportunities for productive partnerships may come about because of a growing emphasis on health literacy. The term has been defined in several ways. The US Department of Health and Human (HHS) Services' publication Healthy People 2010 defined health literacy in terms of functional literacy related to health tasks: "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions" (US DHHS, 2001). This definition, although focused on health care, is general enough to include health-related activities outside of medical care settings such as maintaining our well being, caring for ourselves and others, and protecting our health at home, in the community, and on the job. Tasks can include reading a patient education brochure, deciding whether to buy a brand of food based on nutritional labeling, figuring out how to use a particular product, or choosing a health insurance plan.
partnership between the US Department
of Health and Human Services and the
developers for the National Assessment of Adult Literacy (NAALS) planned for
2002 led to the inclusion of health-related
tasks in this second wave of adult
literacy assessment. Therefore, the 2002 NAALS will include three
different clusters of key types of health and health
care information and services that the general population is likely to
face, identified as clinical, prevention, and navigation. The clinical area will
include activities such as filling out patient information forms or determining
how to take a medicine. The prevention area will include tasks such as
identifying needed changes in eating or exercise habits. Finally, the navigation
area will include tasks related to understanding rights in health care or
in health insurance plans.
In addition, health literacy is included in the goals and objectives for the health of the nation. Healthy People 2010 is the planning document that sets health objectives for the nation and is used in national and state plans and to shape requests for proposals for federal funds. It offers 467 objectives in 28 focus areas, making this decade's report, according to the Surgeon General's report, an encyclopedic compilation of health improvement opportunities (US DHHS, 2001). This document now includes literacy-related objectives for the first time. Objective 11.2 is to improve the health literacy of persons with inadequate or marginal literacy skills. The listing of a specific literacy-related objective is listed under health communication and is also referenced under oral health. This attention is viewed as a milestone.
Professionals in public health and health care do not have the skills or mechanisms to improve the literacy skills of their community population or of their patients. They can, however, work to improve their own communication skills, the procedures followed for communicating with and interacting with people, and the forms and materials they write. Health workers at all levels would benefit from interactions with adult educators who could help them better understand the communication needs and learning styles of people with limited literacy skills. In addition, those in the health field are increasingly aware that a population with good literacy skills may make better use of health information and health services than those with limited skills. The potential benefits from partnerships between those in the health fields and those in adult education are becoming clearer.
The health literacy objective in HP 2010 may offer new and different opportunities for collaboration between practitioners in health and in education. Many of the early partnerships, as noted above, were focused on bringing health-related topics and curricula to basic education or language programs. The emphasis was on bringing new information to adult learners. Because the health literacy objective in HP 2010 focuses on skills, new partnerships may more easily emphasize health-related tasks and related literacy skills rather than specific health topic areas such as cancer or diabetes.
Adults take health-related action in multiple settings; they determine priorities and consult and solve problems with family, friends, neighbors, and fellow workers about health-related issues and actions. In today's society, adults may need to find information on the Internet, differentiate fact from myth, or establish the source of information. Thus, skill-building opportunities related to forms, directions, and information packets are important but do not suffice.
For example, adults who have accessed care and successfully developed the needed skills to follow the complicated regimen to manage asthma may still face difficulties with asthma triggers beyond their control. Living in a multifamily dwelling with exposure to cigarette smoke, dust, mold, mildew or roaches; living in a neighborhood with heavy traffic or idling buses; and working with a variety of chemicals all have asthma-related consequences. Becoming aware of new findings, gathering information, participating in tenants' associations, and involvement in community or labor action groups require skills related to research, discussion, analysis, decision making, and action. Thus, as we explore this area and define needed skills, we must be sure to move beyond the realm of medical care and include action taken at home, at work, in the community, and in the policy arena.
Many of these broader communication skills are already being taught in adult education programs. Adult educators focus on language and vocabulary acquisition, reading, writing, numeracy, oral comprehension, dialogue, and discussion. Their expertise can support and enhance health literacy goals. Health-related curricula incorporating attention to these skills can enrich adult learners' experiences and will support health literacy goals. With a focus on health literacy skills, the HP 2010 objectives will encourage health practitioners to work with adult educators on the delineation of needed skills to support health literacy rather than on a transfer of health information.
Another task is at hand as well. Many of the health-related literacy tasks under discussion involve the use of existing medical documents such as appointment slips, consent forms, and prescriptions. An underlying assumption is that the materials and directions are clear and appropriately written. Yet, we know from the results of more than 200 studies that the reading level of most health materials is well beyond the reading ability of the average reader and that the format or presentation of information is similarly inappropriate (Rudd, 1999a). The links between literacy skills and oral comprehension have not been explored in health studies and the vocabulary of medicine and health may well provide barriers in spoken exchange.
As a consequence of these findings, strategies must be twofold: increase adults' health-related literacy skills and increase health professionals' communication skills. Adult educators can contribute to these efforts. Their skills and experience can help health professionals to understand better the factors that contribute to reading and oral comprehension. Educators can also help health professionals to improve written materials and, perhaps, verbal presentation of information as well. The Canadian Public Health Association, for example, has mandated that all materials geared for the general public use so-called plain language and avoid the jargon, scientific vocabulary, and complex sentences that make materials difficult to read. Accreditation committees are increasingly encouraging hospitals and health centers to examine and redesign their documents and procedures for informed consent. Expert advice from adult education professionals will clearly be needed and welcomed.
A new partnership between health and adult education researchers and practitioners can also contribute to improved teaching and learning in both fields. Studies of participatory programs, participatory pedagogy, and efficacy-building in classrooms, community programs, and doctors' offices indicate that learning is enhanced and change is supported through experiential learning opportunities. Roter and colleagues (2001), for example, provide evidence for the value of adopting lessons from participatory pedagogy in doctor/patient encounters. Minkler (1989) and Green and Kreuter (1999) have long supported such approaches for health promotion on the group and community levels. However, participatory programs and experiential learning are still not the norm in either heath or adult education settings. Perhaps partnerships among practitioners in both fields will lead to rich explorations of approaches that support adult learning.
literacy is a new concept that is
getting a good deal of attention. We
can support healthful action by
considering the skills needed for active engagement and
by envisioning the adult, healthy or ill, as an active partner and decision maker. Educators, researchers, and practitioners can work together to explore strategies for improving communication, increasing needed skills, and fostering efficacy.
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About the Author
Rima Rudd is a member of the faculty in the Department of Health and Social Behavior of the Harvard School of Public Health. She is the principal investigator for the Health and Adult Learning and Literacy research project of NCSALL and is the recipient of the first Pfizer Health Literacy Research Award.